Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi all
I have had gradual onset of cfs for about 7 years, which has steadily got worse, then diagnosed with fibro, I have reduced my working hrs over the years and am now doing 3 shorter days a week and they are split up over the week
The question is I am still declining and am on sick leave at the moment for a few weeks, but I find that I feel worse when im off work, is that just because its catching up with me or because pushing myself to work does help in a way
Im basically thinking of taking some long term sick in the new year to try and pace myself properly as this is impossible when working but |I dont want to feel it is going to make me worse and unconditioned
Also worry about how I will cope not working as its my only real social time and takes focus off of my symptoms
any advice would be greatly appreciated, hope ive made some sense :)
Luna x
I have had gradual onset of cfs for about 7 years, which has steadily got worse, then diagnosed with fibro, I have reduced my working hrs over the years and am now doing 3 shorter days a week and they are split up over the week
The question is I am still declining and am on sick leave at the moment for a few weeks, but I find that I feel worse when im off work, is that just because its catching up with me or because pushing myself to work does help in a way
Im basically thinking of taking some long term sick in the new year to try and pace myself properly as this is impossible when working but |I dont want to feel it is going to make me worse and unconditioned
Also worry about how I will cope not working as its my only real social time and takes focus off of my symptoms
any advice would be greatly appreciated, hope ive made some sense :)
Luna x
of priorities. I think maybe check out long-term sick leave, disability, etc., and have that as a "net" if you need it, and see how continuing to work makes you feel. If you don't do a symptom journal, starting one might help you compared off-work to on-work.
I had to make this choice a long time ago, and it is *never* easy. ope something I said made sense,
Leo
Read up on low dose naltrexone. I take it and it has energized me tremendously. Start with 1.5 mg for 3 months before increasing and take it in the morning else it will keep you up. These last two points are very important.
This change has been very hard for me. I worked as a nurse and unfortunately had an event you hear of on TV. I made a bad error almost killing a patient.
This event made it clear to me that due to fibro fog I could no longer work as a nurse.
So I have been living the issues these last months.
My issues are:
1. Exercise
2. Depression
3. Self esteem ( I've always identified myself as "a Nurse"
4. What to do with my time.
5. Social interaction.
6. Lack of money.
Just to mentions a few issues.
I initially had a major flare, couldn't get out of bed for days because fo the pain. I was so afraid that would go on forever, lasted about a month. Gradually got better.
I'm at the stage now that I'm trying to occupy my time sewing.
I've made myself a schedule that includes up at 7am, exercise daily, social interaction with the few friends I do have. I would like to do some volunteer work but I can't be counted on to be somewhere at a certain time or do a lot of physical stuff.
I have applied for SSI and am waiting on that determination.
I am on here a lot because of the support I receive, and knowing that my symptoms are like others.
You don't mention what your treatment plan involves. I do know one thing, if we limit our activity we will hurt more. I am so sorry you feel you can no longer do your nursing as you would like to do, but I am wondering if you could still use your schooling for a less hands on type of work situation? I know you have put a lot of time and energy in your schooling, that itself has to be very disappointing. It does seem as though an awful lot of nurses develop these syndromes--I often wonder what the common thread might be?
I have possibly only one suggestion. Do you think maybe seeing another doctor--someone with experience in treating these syndromes could offer more help as far as treatment goes? I think fibromyalgia pain can be managed but the other stuff--mainly fatigue and brain fog are real challenges. I worked for over 10 yrs after being diagnosed but I was given (unofficially) permission for rest breaks when needed and that helped a lot. It sounds like they are trying to work with you on some issues.
Don't give up, even if you end up on SSI. You know, sometimes our plans in life are detoured and many prayers go unanswered. There may be something else you will find equally rewarding, at least I hope so. Don't allow negative thoughts cloud your way.
For me, I have to work. I am great at blocking out pain and fatigue when around other people (great actress). I do need "crash and burn" days though and this weekend, turned into a "crash and burn" weekend.